A short and powerful video expressing family care giving. There are many ways to share our stories and help others know what’s going on, and this is a fine example,
I need you to soothe my head
Turn my blue heart to red
(the late Robert Palmer. More later)
Our allies in care giving are precious. The folks who coordinate and provide services to our son with autism (Allies! Yay!) were quite helpful with recommendations for a new primary physician (Allies! Yay!) to see our guy. I want to distill some of that experience in ways that I hope will be useful.
- Let the person in your care help direct the search. Note his/her day to day preferences. Is your loved one more comfortable with men or women? Younger or older adults? Will the distance to the doctor matter – how does the person in your care tolerate travel? Any and all subjective impressions can help you seek out the right doctor.
- Know your needs. We wanted a younger doctor who with potential to take care of our son for years to come. We wanted a practice where every appointment would be with that actual doctor, not a Physician’s Assistant. (That’s not a knock on PAs, it’s just that our son does better with familiar people rather than serial strangers).
- Ask around. We do it all the time for all kinds of goods and services, so ask for recommendations. We made an appointment to meet a particular doctor based on recommendations from professional staff we trust. Friends who are caregivers can give you good insights from their experiences, too. (You can tell I’m an aging caregiver. I prefer old school “human intelligence” gathering to online stuff like Yelp. I want to know the source of a review or recommendation, and I’ve had professional friends burned by crummy reviews made up by crummy people.)
- Schedule a meet & greet. Start building a relationship before there’s an emergency or acute problem. We made an appointment for our son just to meet the new doctor. I don’t want to be flippant about this. I realize that for some of you, insurance issues might inhibit you from making appointments of this sort, especially if you are going to check out more than one doctor. Our son’s disability coverage made this doable for us.
- Ask questions and share info. Don’t consider any question rude or stupid, or any anecdote about the person in your care to be trivial. My wife was clear about our son’s resistance, up to and including violence, to short tempered people or while in a post-seizure state, and she asked the doctor about his ability to remain calm and patient.
- Observe. The person in your care needs to be at the meet and greet. You will sense dynamics with the service provider right away. The new doctor did the normal stethoscope thingy on our son’s back and chest. Our son pushed the stethoscope away – but with a big smile. That is our son’s way of bonding. He goofs on people he likes. He wasn’t pushing it away in discomfort or anger, but in order to establish a kind of play time with the doctor. This was a good sign.
I hope some of this is helpful. There’s the saying about “being your own advocate” when interacting with the medical world. Caregivers need to practice that for those in our care as well.
OK, I said I’d get back to Robert Palmer. Here’s your dose of 70s music:
I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.
Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.
OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,
Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT
So up and at another day, friends. Let’s affirm the reality together, and let the power flow…
We went to a wedding over the weekend. All three of us – our son with autism included.
There was much in our favor. The couple came from an extended family of friends that our son, Joey, knows and enjoys. The atmosphere was happy earthy rather than formal and uptight. The weather featured a few of the rationed really-nice-days allocated to South Dakota every year. And there was food to be downed.
As I shared earlier, the rehearsal went really well for our whole family. And we were going back to the same place with the same folks for the wedding and reception.
Maybe it was the volume of the music in the reception hall. Maybe it was the bigger crowd of people. Whatever it was, it brought out Joey’s “best.”
Here’s a surveillance photo of the suspect. Notice that the look isn’t very happy. That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it. Calm words about “sharing” failed. Then he ate all the chex out of the mix and left us with just the pretzel bits.
What you might not be able to tell from this pic is that he’s not in a chair. He’s on his knees on the floor. We tried to coax him into a chair but that agitated him.
Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.
Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.
Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.
I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.
The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.
Care giving is a game of home court advantage – you usually wind up losing on the road.
My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene:
Here are a couple of good piece by MOMS of kids (little and grown) with autism:
At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.
Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…
And give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore. (Strong language & content).
It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.
It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.
Me? I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.
While Joey spent the weekend in a respite apartment (that’s respite for his caregivers, mind you, he’d rather be home with his own stuff), Melissa and I traveled to a lovely spot in Minnesota as guests of a church with a big heart for service to others.
We spoke as a couple at a forum for Autism Awareness Month. It was well attended by folks caring for loved ones with autism and others who have friends or extended family members living with or caring for special needs.
A number of great questions and comments came up. I want to return to some of those here on the blog. They’ll be in no particular order except as to when they pop back into my head.
Melissa brought up what we call “the void.” Taking care of our son Joey for the last 23 years has blessed, warped, changed or any-number-of-other-verbed every aspect of our family life, our marriage included.
I hear similar thoughts from caregivers in other situations, such as those caring for a disabled or chronically ill spouse, or grown kids caring for parents with dementia or Alzheimer’s. Care giving takes over everything. Some relational bonding is put on hold or evaporates, while the care giving routines become a kind of alternative glue holding people together.
Then the daily care giving goes away. The person under care dies or is institutionalized. In our case, Joey is on the waiting list for a group home opening. Our dawn to dark (and sometimes in the dark) duties will move out with him. Melissa and I will be staring at each other with a lot of “Now what?” space in between us.
As important and immediately refreshing as we found our trip, we were urgent about getting things back to “normal” and we picked up Joey and whisked him to one of his favorite restaurants. The house might have been uncomfortably quiet as we unpacked a few bags and…
This is ground we’ve not been over, but can see in the not-too-far distance. We are trying to regenerate some of our couple time together, and keep up friendships, and envision things we want to do when we’re free to get on with them.
But we’re also interested in the experiences of those who’ve been over the territory, especially as couples. Did you experience the void? What did it do to your relationship? How did you (plural you, y’all) come out on the other side? Or did you?
Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.
In Caregivers Are Only Human, Rick Phelps writes,
Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.
There are several comments at the article that are worth reading as well.
In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago. The aftermath of that mess serves as an image for caregiver breakdown,
Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.
All relationships – not just care giving situations – can take us to our limits and show us at our worst. As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.
Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.
The first book signing for Raising a Child With Autism is history, but this isn’t about the book. It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet. My prayer list keeps growing with their names and needs.
One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges. They care for a son with autism.
We noticed that people stopped inviting us to stuff. I think they’re afraid of our kid. My wife is at home alone with him more and more. She’s really feeling isolated.
All kinds of care givers suffer in similar situations. People don’t invite you out or you find it too much of a hassle to go. Competent babysitters or respite providers are hard to find. The person in your care is agitated if you go out on your own, but resists going along when invited.
Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season. It begins with people in isolation,
When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…
But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.
Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”
We weren’t able to attend an Easter service. I had to work and Melissa had to – did you guess? – be home with Joe. Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.
There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula. But I suppose it begins like most efforts to end isolation, with a conversation,
And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”
We are blessed this Easter. Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.
We are grateful to all who read what we share, who leave messages and otherwise communicate with us. You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.
May God’s peace be always with you.
Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.
Here’s a bit of it, with some key quotes available for Tweets embedded by the host,
NORMA GAIL: Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?
SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.” It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity). One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response. We were spared that – Joey is very connected emotionally, albeit in some quirky ways.
There is no “cure” for autism or any one therapy that is useful in all cases. Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.
Parents deal with feelings similar to grieving a death. Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism. Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.” But many will never experience some or all of those things. They have other pleasures – parents have to learn to love those.
Siblings can feel ignored due to all the effort and attention put into caring for the child with autism. The whole family is impacted.
Allies mean a great deal. Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better. There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.
NG: What are some of the greatest challenges faced by parenting a child with a disability?
SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family. We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”
In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst. It’s not the same as a tantrum, in which a kid wants a toy. It is an all consuming surge of energy in an effort to connect with a world that seems out of touch. It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.
There were several years where we didn’t think that Joey or any of us would ever sleep. The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play. I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”
Parents share war stories of dealing with “the system.” Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids. Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.
Check out the interview. Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.
The truth is going to sound wacky, pompous and neurotic.
But I’ll lead with the truth and then list some more palatable stuff.
The truth is that I was in the park with our son, Joey, who lives with autism. His slightly older, neurotypical (aka “normal” or at least NOT living with autism) brother had just driven away to start college. I was praying, which was easy as it was a gorgeous day. Obviously, my heart was full – memories of the kids over the years, hopes for what would come – so I was pouring that kind of stuff out to God.
Not audibly, mind you. The other parents were not telling their kids, “Honey, come over here, away from that strange man.”
And just as surely as I was speaking to God, God spoke back, not in a audible voice (I’m only neurotic, not psychotic yet), but in a thought that flooded my mind and overflowed into my heart: You can write a book that helps other family caregivers.
I knew right away that I would be writing in the midst of care giving, not from past experience. The book would never be The Five Essential Habits of Excellent Caregivers or something like that. Rather,
- I wrote it so that people confined by the demands of care giving would find companionship, at least in the stories I tell but hopefully beyond them in the divine, “patient gardener” who has helped me beyond what I could ask or imagine;
- I wrote it so that stressed out people could laugh. You have to find the humor, dark though it might be, to keep going as a caregiver.
- I wrote it to process my own inner stuff. As I said, I wrote it while care giving, not after. And so it was a combination of meditation and therapy for me as much as for any potential reader.
- I wrote it because I enjoy writing. It is a gift I have to share and, frankly, I communicate better through writing than any other means. Well, except yelling or crying and stuff like that.
A long time friend shared this lovely pic of the book on a desk where he studies and prays. I pray and hope that this little book serves God by helping family caregivers in the depths of their hearts.